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Hughes Syndrome APS Forum

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Aches and pains

stargazer5761 profile image
9 Replies

Does anyone else else get aches and pains in arms legs hips knees etc 

 My specialist put me on hydrochlorquinne to help with this and also the fatigue or should I say exhaustion that I have all the time 

 I've been on  it 4 months  now and not feeling  any difference  

 What does any of you take for these symptoms 

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stargazer5761 profile image
stargazer5761
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9 Replies
MaryF profile image
MaryFAdministrator

My usual reply, is of course, how is your vitamin D? Iron and B12? and how is your Thyroid?  This is all only part of the illness I know, but important nevertheless.   MaryF

stargazer5761 profile image
stargazer5761 in reply to MaryF

I have bloods regularly  and I'm on ferritin  and vitamin d . Thyroid all ok even checked ft3 and ft4. Makes it hard to work and have a normal life sometimes 

MaryF profile image
MaryFAdministrator in reply to stargazer5761

Good for you, for being so thorough, I hope you feel better soon,  my daughter took a good 5  - 6 months to feel better on Plaquenil, not a drug I can tolerate myself.  Keep well.   MaryF

stargazer5761 profile image
stargazer5761 in reply to MaryF

Is hydrochlorquinne from zenitiva the same as plaquenil 

MaryF profile image
MaryFAdministrator in reply to stargazer5761

Hi again, yes here is what was put out by Lupus UK:    lupusuk.org.uk/plaquenil-av...

MaryF

stargazer5761 profile image
stargazer5761 in reply to MaryF

many thanks    lesley

Tammylola2012 profile image
Tammylola2012

Have you had an ANA test ran to see if maybe other autoimmunes going on? Also  a rheumatoid factor. I had both done when complaints about aches, pains and unbearable fatigue. All came back negative thank goodness. I did not see you mention this so this might be another answer. Mine was low B12 and severe deficiency of D. After 4 weeks I feel a lot better but still have fatigue. I will live with fatigue as long as not tear jerking aches and pains.

Beartje profile image
Beartje

Hi! Could you, by any chance, be (somewhat) hypermobile? I get those pains too. As a child my GP once told me there was abnormal flexibility in my knees. During pregnancy and a year after I had pelvic instability. When I was in hospital after I had my child one of the doctors coincidently found out I was hypermobile, but I never thought about it since. Lately (I'm now nearly 40) I have pelvic/hip pains again (my physiotherapist has had to straighten my pelvis a couple of times now) and she too told me I'm hypermobile (so the joints between my muscles and bones are too soft). This means the muscles have to work extra hard and I'm less aware of how I move and hold my body (which increases the chances of getting hurt during normal movements), so I have to make myself aware (for instance not standing with my knees 'locked') and I'm doing a lot of exercises now I got from my physiotherapist to strengthen the hips/back/upper legs. Hope the pain gets better soon. Might be worth finding out if this could apply to you.

jetjetjet profile image
jetjetjet

I have pain in arms legs and back and it's due muscle spasms- Osteo  things that can be directly related and atributed to the APS. I go to therapy {dry needles } i end up going back about every 3 months and I also get back shots every  two  months . but when  the times between the two don't go in  succession then    i am in trouble . I am on two muscle relaxers and 2 pain killers and  and another general  med for both . AS my problems with the APS gets worse than  so do the other problems  - started exercising again in March after a year off due to the foot   flesh eating problem i had.{ of which they never did identify after  all the tests and specialists } I think the  gym routine is getting more intense so I am working on the exercising end of trying to help myself with this issue  . 

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